My name is Thomas Campbell, I am a design student from Cardiff in my final year of studies. I hope you don't mind me posting here.
I have been in touch with a company that is interested in developing 3D printable footwear for peoples affected by lymphoedema, and to make sure I take the project in the right direction and make the project as successful as possible I was hoping I'd be able to get some experiences from the wonderful people on this forum?
If you're interested in helping me I'd be extremely grateful just to have 5 minutes of your time.
Mostly I'm interested in current footwear that you are using and any information regarding where you sourced them from, any difficulties you may have, criticisms on shoes on the high-street, specialist therapeutic shoes, comforts, discomforts, pros cons, are they fit for purpose, waterproof or not, and what activities they'll allow you to do?
I'd absolutely love to hear from you, and thank you for your time,
All the best,
Thomas Campbell
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TomCProductDes
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I would like to help. I have tried most places over the years for footwear including custom made and even they are not without problems. So appreciate someone doing research
I live in Hertfordshire and primary lymphoedema sufferers are palmed off to Cambridgeshire for treatment. Not ideal but better than nothing I suppose.
Thomas - recommend you contact the LSN direct, and ask if they would be willing to notify their members about your project - there are about 3000-/+ far more than this forum. Have you considered using 'survey monkey'?
That's a good idea thanks! I was going to set up a survey monkey if I got a positive response from the community (which I certainly have!) I'll be getting one set up tonight then!
Hi,
I use Keen and Hotter (wider fit) shoes. Usually I order them online so there is some trial and error with the fit. When I have found a style that works then that is the style I wear for ages so having the condition is limiting for fashion choices and to be honest neither type work for evenings out as they just aren't particularly attractive.
Keen make active shoes so there are options for waterproofed shoes. Lace ups work with Lymphoedema as you can tighten during the day as swelling changes. They actually help therapeutically too by preventing the foot swelling excessively.
Many high street shoes finish too far down the forefoot so the swelling just puffs the foot up and even falls over the shoe edge as a bulge. The main problem I have here though is that my feet are now different shoe sizes.
Then wellingtons - almost impossible unless you spend hundreds - Jileon do extra extra wide fit, but hard to find on high street.
Thank you for showing interest! Yes, it is very hard finding comfortable footwear for lymphoedema sufferers. Also as you get older other problems creep in (bunions!) which make it harder. I wear Birkenstock shoes at home - the buckles are able to be loosened and tightened depending on the swelling, and they are just so comfortable and supportive. For daily wear, and to work I can't tell you what a joy it was when I discovered MBTs. They are very expensive (I have only ever owned two pairs) but you can buy them VAT exempt which helps. They are fantastic, the walking action on the sole improves circulation and posture, and once you are used to wearing them are very beneficial to those suffering lymphoedema. In the winter I live and die in my Fitflop short boots too (on my third pair), for the same reason, a big bouncy sole that acts like a shock absorber, and improves circulation, They are also roomy enough that I can get my puffy ankles into them. So Birkenstock, MBT & Fitflop boots are my three staples. I have never owned a pair of long winter boots (I have wide ankles and wide calves) and I struggle like mad to find something more attractive to wear for weddings and evenings out. Usually buying something 'wide fit' from M&S or Evans, that I can get on, but after about and hour I can't wait to get off! Good luck with your studies and thank you.
Great to see that you have a footwear solution that works for you! I'll be looking through your answer in detail to make sure I get down all the valuable information you've provided for me!
Can never up a shoe from shop always online, then never know if they are going to fit or be comfortable. Cosy feet try different styles but always have same template jazzed up. Normal price for theses shoes are around 50 cheapest up to over 100 that is with vat exempt. I tend to wear trainers. Hotter shoes are not wide enough for my feet, I'm a size 6 I buy from sandpiper, coseyfeet, jbwide fit and wauldlafer.
I also have to wear insoles which add to the problem!
Thanks for your reply! I'll take a look at those brands. Interesting that there's a company that jazzes up shoes as I struggled to come across specialist footwear that wasn't black in my initial searches, which I sought to be a big problem (everyone needs to be stylish!)
Hi Thomas, it's great that finally there's someone taking an interest so thank you.
I have Lipoedma and Lymphoedema and while I'm "lucky" that my feet generally do not swell I do have very large legs with an ankle cuff (it over hangs my foot and ankle) so certain shoes/styles just don't fit or are simply too uncomfortable.
I generally wear flat ballet shoes, flyflot adjustable flip flops (neither of which are waterproof) or trainers - but any trainers have to have a low back so there's no rubbing. (Socks are also no use as they wont go over my ankle)
As for boots well even if I could get them beyond my ankle they would never go as far as my calves.
If there is more information that I can offer please ask
Very useful information on the design features that work/don't work on highstreet bought shoes, I'll be sure to take this into account when writing this up
Tom, as I mentioned I have Lipoedma as well as the Lymphoedema, I belong to a group called Talk Lipoedema, (talklipoedema.org/) can I suggest that you also contact their admin team for opinions from Lipoedma sufferers as often their foot/ankle/leg problems are slightly different to Lymphoedema sufferers so their shoe/boot requirements also differ.
Thomas I have arm lymphoedema so cannot contribute but I just wanted to say iy is FANTASTIC that you are taking an interest in the condition and the difficulties lower limb lymphies have. Good luck with your project.
Thank you! I am humbled by the responses I am getting on this forum. In the three years I have been researching for projects at university I have never been met with such enthusiasm and positivity! Every response here has been useful and I am extremely grateful for the time you are giving me!
I have left leg lymphoedema and every year become worse. I choose the wide shoes, in summer I only use slippers and during colder days Snug Boots (like UGG Australia). I wear wide trainers also with no stapling on the sides. I dont use any special brands. I use to buy Clarks wide shoes. Hope this helps.
I have heard of people wearing uggs before, what is it that makes them a good solution? I'll take a look at Clarkes, keen to look at highstreet solutions and where they shine/fall down
Hi Thomas, I live the in US and am a lymphedma sufferer. One thing that would be extremely helpful would be to have compression built into shoes but also provide adequate space for wider sizes. Havent yet found a shoes that can do that but would be a godsend to folks like me.
That would certainly be something to look at as I know compression bandages and socks are used to treat the symptoms, I'll have a look into the viability of this. Many thanks!
If you're willing to do that it could be a real help, also if you any footwear, or footwear you have worn out that would be great! Could you please provide these either by message or via email at projects.tcampbell@gmail.com
I have received these, thank you so much! They'll be of great help to me
Hi Thomas, I have bilateral lower leg Lymphedema and osteo/rheumatoid arthritis for 5 year I have only worn board angel flip flops what ever the weather i.e., rain snow as they are the only thing that is comfortable on my feet but since been diagnosed with the Lymphedema I searched for some proper footwear in case someone catches my feet when out shopping, the only ones I have found wide enough with plenty room are a trainer by the make of fabric from sports direct.
Thanks for your response, I'll make sure to do plenty of critiquing on boardmasters and I'll take a look at getting a pair of fabric trainers. Any Particular reason why you find these the most comfortable? e.g. shape, width, fabric, soles?
They are the only ones I felt ahh yes I can finally wear proper footwear instead of flip flops for 5 year, the fabric running trainers are wide and got a soft sole but I still have to use gel pads where the ball of my feet are due to arthritis, they are not very nice to look at but hey who cares when my feet will be warm and dry in the winter rain & snow instead of freezing cold and wet.
I will look forward to seeing what you come up with &a good luck.
I have for many years had probs with foot wear I used to get men's shoes because they were bigger I say shoes but they were slippers . Now though I am having to wear a Velcro strap toe less shoe from clifford James as these are only ones that fit . Recently I am wearing a shoe on my left foot and a slipper on my right as my right foot is very deformed due to lymphoedema the toes are not straight but turn outwards the big toe is very swollen and the next two toes I am walking on the tips not bottoms as the toes are swollen the 4th and 5th toes are bent under the 2nd and 3rd toes I would love to be able to wear a good pair of shoes
My son is three years old and has primary Lymphoedema in both feet. We have so far managed to get shoes from Clarks that fit. He doesn't really get a choice as the design of some styles is just generally too narrow or seems to be quite stiff leather. He is coming to an age where he wants to be 'cool' like his big brother and this extends to the shoes his brother wears! Sports shops are a 'no no' as the trainers never seem to open far enough down towards the toe so there is no chance of his feet even getting into the trainer, let alone do it up. He currently has converse style shoes and they are great. Also elasticated lace-ups seem to help with the getting on and off.
Summer is tough because we have been told not to put him in sandals as he needs an even distribution of pressure across the top of his feet. I feel sorry for him having to wear thick compression socks plus bulky shoes on a hot day.
Hi I was diagnosed some years ago with lymphoedema and wore Faith shoes . It was a great shock to me to find that the shoe industry has neglected us, we need shoes and boots with extra width, cushioned soles for comfort however, we would like style to make us feel good not frumpy.
I now wear Birkenstock instead of slippers and Hotters shoes the ones that have a bit of style
Thanks for your reply, narrow shoes seems to be a reoccurring answer here, I'll make sure to take your considerations into account! Glad you've managed to find something with a bit of style! Thanks for your help
Hi everyone! Hope all is well, I have been through every response on the forum so far and I am very impressed, in order to collect data easier I have decided to distribute a 6 question survey. If you could fill this in for me I would be very grateful! The link is as follows-
Also, as I can see how positive the responses were, I'll be writing my findings and design process on a blog. I'll post the link to the blog up in the next week or so, thank you for you time!
Hi just tried your Survey Monkey link but can't get in - just says " Oh bananas!
We can't find the page you requested. ". shoes - I live in a pair of Crocs that I have split down the front and put in laces - it means I can loosen them off when I have to wear wraps. I can sometimes wear a Hotter shoe on my right foot, but can only get a Cosifoot slipper on my left, using the additional velcro strap when I have a wrap on. When the heavy rains come [I live in wet west Wales, I guess I will have to stay at home or puddle around with wet feet.
Shwmae, croeso o Caerdydd! Thanks Purple Hat for your response, I'll look into why the survey isn't working! I'd be really interested in seeing a picture of your crocs if you'd be willing? As a product designer that sort of prototype is my bread and butter! And if it works what a great idea!
That's a shame about getting your feet wet, it seems that there is a real gap in the market here.
In my country the width of shoes is smaller coz most filipinos are smaller. I buy flat shoes for my everyday use. But for meetings and events I wear wedge coz it can stretch easily. I have lymphedema in my right leg and it's hard to find shoes for me where I am now coz my left foot can fit in but my right foot does not.
Hi, I'm Emma, and I have Primary Lymphoedema in both legs and feet. But was also born with a rare medical condition now known as Proteus syndrome which effected the growth in my hands and feet meaning now as a 36 yr old female take a UK men's 15! On a day to day basis I can buy online and have just found out that Ugg boots go up to my size so I am very happy especially now winter is here! But the main problem I have found most is getting "pretty girly shoes" for going out and special occasions. After trailing the internet we came across a lovely lady who didn't judge and was more than happy to make a bespoke pair from a last that I now have which was costly (the sort you would have to save for before buying another pair) but my parents were happy to pay for me to have my first pair of heals! It can feel like you are penalised for having a condition you can do nothing about.
I also just wanted to say that I am new to the site but please to have found it, and to reiterate what others have said that it is nice to know that someone is interested and wanting to help.
I have lymphedema mostly in my left leg both of my legs leak and after wearing my shoes for a little while they are soaking I put the backs down on the because me heals are vary painful
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